“We all live in fear now” – what we can learn from Camden’s Carers

The role of Carers has never been more vital. In addition to the incredible support they provide, day-in-day-out, Carers have an important story to tell us about the impact of Covid-19.

“As Carers of the most vulnerable people, we are front-line workers.”

What Carers told us about Covid-19

Over 70 Carers in Camden have recently told us about their experiences during the pandemic. Carers responding to our survey were more likely to have used services, when compared with other respondents, since Covid-19 emerged. In addition, when talking to us about their health and wellbeing, they were more likely to report having been impacted by the pandemic.

In certain ways Carers experiences appear to be very similar to other Camden residents. They are – generally speaking – finding it easy to find and understand information about Covid-19, but this information is often seen to be contradictory.

“Guidelines seem to be contradictory and don’t make common sense.”

In addition, Carers obtain information in a similar way to others in the Borough. However, they are more likely access information via Camden Council and radio stations; but less likely to use social media.

Their feedback reflects the diversity of our community and can provide a timely insight into the impact of the pandemic. They are a well-informed group, which the health and care system in Camden can learn a considerable amount from.

An insight into how services are changing

Carers have reported concerns with emergency dental services, a lack of personal protective equipment (PPE) use among health and care staff (in May 2020), a lack of appropriate support for people with mental health conditions and issues with accessing other Government support e.g. prioritised shopping lists.

“If you ask to stop the Government boxes of food you must come off the Government shielding list – which means then that you don’t get onto priority delivery lists with supermarkets.”

However, a more frequent complaint has been made about the loss of access to support or respite services that have provided invaluable breaks.

“My Dad has Alzheimer’s and my mum mental health issues and both struggling without support groups and visitors and the situation deteriorating as a result. No alternatives have been provided. They can’t use technology very well for remote services.”

“One [carer] comes just once a week to help him shower because I cannot lift him. This is much reduced hours as before. Happy that council allows direct payments to be spent more fluidly now, especially on PPE.”

“We gladly care for our loved ones. But, during this situation, if you ask for help, by the time you get a response it could be too late. We need help proactively with people checking on us and seeing what we need.”

Impact on health and wellbeing

Loss of access to support becomes more concerning when considered alongside what Carers tell us about their health and wellbeing. They are much more likely to have been impacted by Covid-19 than other residents in Camden.

“Really testing my inner resolve. Psychologically a proper mental health assault course!”

“As carer for someone else, being lock up 24hr and meeting their need it has been stressful, I’m physically and mentally exhausted.”

“Working parent with two primary school kids helping with care for elderly/vulnerable parents. Restrictions on being able to visit them freely is challenging… Loneliness, boredom and isolation is making mental conditions like Alzheimer’s worse.”

The nature of this issue is similar to what other people in Camden are experiencing, they are more stressed, anxious, isolated and depressed as a result of Covid-19. But whilst the issue is similar, Carers are more likely to experience this impact and this warrants careful consideration by leaders of the health and social care system. Particularly given the over-representation of women within the caring population.

In addition, a notable theme of ‘fear’ emerges in these responses.

Fear of contracting Covid-19

Carers often cited fear of catching the virus or exposing their loved one to the virus and talked about taking extra precautions.

“What do I do if I get it? Who cares for my wife? We haven’t had any clear guidance around this which has left me terrified to catch it. I’ve broken my glasses but fear seeing doctor. I’m even scared to just open the door. I don’t know how I’ll be able to go to the store when this is all over.”

“We all live in fear now.”

“I disinfect all of the food we get delivered. What I do might seem extreme to some. But to me it’s not extreme, it’s my life. My wife is so compromised that we can only accept 100%. If we’re only 99% cautious then she’s dead.”

We will be doing more work to understand this issue and the extent to which it varies between different communities.

An insight into the stress of a Carer

Whilst Carers have similar concerns to the rest of the population, health and care services must continue to bear in mind that the lives of Carers can be very different to the rest of the population.

“We are both shielding and have both had [Covid-19]. When I had the symptoms I had to call NHS 111 and they were brilliant. Got through on the second time of calling. The first time I called I couldn’t make sense of the buttons to press, it was complicated. It took 3 to 4 hours to get a call back.

I experienced shivers and a decision was taken to pre-medicated me. I’m an HIV survivor and have [another long term condition]. Then we had nurses calling for a few days, before a GP then took over, who called twice a week. They then stopped calling and I felt totally alone. [At that stage] you either get over it [Covid] or you don’t. There was a loneliness or abandonment feeling. We have no family.

My partner then had a very high temperature. I took him into [a local Hospital] and they pumped him full of medication. They sent him home and said ‘he’s safer with you than he is with us’ because hospital was full of Covid. This was the right thing for my partner, but not for me as his Carer. I was still struggling to breath. I sat in the living room and cried.”

A unique story – but one that is likely to resonate with many other Carers.

These stories emphasise the importance of working with everyone as an individual. An incredible challenge for a health and care system during a crisis, but an approach which must be central to recovery plans.

Support for Carers

Whilst it appears that access to some services has been lost, other support remains in place and new initiatives like the Mutual Aid Networks have sprung up and were described by one respondent as a “lifesaver”.

Similarly, another told us:

“if it wasn’t for Camden Carers, we wouldn’t be shielding… [they] have been brilliant – sorting out food for us”.

In addition, Carers can now access Covid-19 testing which has been an important issue for Carers contacting us.

If you are a Carer who is interested in exploring the support available, a set of resources can be found at the end of this Blog.

Next steps

We were encouraged to hear about the benefits that ‘digitisation’ is bringing to some Carers. Although, we are equally concerned about responses from parents of children with Special Educational Needs. Issues we will explore further in the coming weeks.

Healthwatch Camden is routinely escalating issues and sharing insight with senior leaders in the health and care system. In the coming weeks and months we will be using our role on the Health & Wellbeing Board to ensure the voice of residents is central to future plans.

Please get involved and be part of the conversation to improve health and care services in Camden.

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Camden Carers offer a mental health carers group on Fridays and other support services.

Camden Council resources for carers including rights to a carer’s assessment.

Recommendme has a list of voluntary organisations and groups that are providing social activities to support carers in Camden. 

Mobilise is a group of carers coming together for an online cuppa. Cuppas provide a chance to share concerns, practical tips and community support. Joining is completely free, and easily accessible with basic technology. 

If you or the person you care for is age 55 or over, and in need of food, Age UK Camden are offering emergency food parcels as part of their Nutrition and Wellbeing resilience package. Age UK Camden can be contacted on 020 7239 0400.

Healthwatch Camden has collated links to a range of mental health resources in Camden. Many of which can be found at: https://www.mentalhealthcamden.co.uk/

Carers in Camden

According to the latest Joint Strategic Needs Assessment (2016), there were approximately 17,000 unpaid carers in Camden. This number is likely to be much higher now due to the aging population in Camden and the impact of the COVID-19 pandemic on caring. A new report from Carers Week estimates there are an additional 4.5 million new unpaid carers in the UK since the COVID-19 outbreak, bringing the total to 13.6 million unpaid carers in the UK. Because many carers don’t see themselves as carers, they are often invisible and unrecognised.

Carers week

Carers Week is celebrated from 8-14th of June and this year’s theme is Making Caring Visible.